We’ve come a world away from the early medical treatments of HIV and AIDs. The fear and newness of HIV/ AIDs ultimately sculpted so many of our thoughts and opinions about the virus that works to attack the body’s immune system. Worse, a lack of awareness and understanding of how the virus works has led to a great depth of stigma about the virus. Many people doubt the contractibility of the disease when it comes to themselves, a lack of knowledge about it also plagues the way people interact with those who have.

Users on Reddit are sharing their experience with HIV to help break the stigma and inform others.

Check out some of the stories below.

“Honestly, I didn’t have one. I do remember seroconversion though. I felt weak. Breathing was difficult because each cough took all the energy out of me. I ached. Piss felt hot. Not like a burning sensation, but like it was literally hot, and the rest of me was cold. I was shivering and felt like I was being stabbed with lots of little needles. I spent a month on the couch taking an antibiotic I was allergic to because the hospital absolutely insisted on it. It made me feel even weaker. It made me vomit, or worse, my body threaten to vomit but never actually giving me the relief. This lasted an entire month. Then I felt fine.

I started to look and feel a bit better, but people around me said I seemed paler and looked like hell. I just chalked that up to working retail. I noticed a painful growth in my groin, eventually making wearing a seatbelt difficult. I thought I gored myself with the bag hooks too many times behind the register. Turns out, I had a lymph node that had swollen to the size of a robins egg and had to be surgically removed.

I got tested for HIV twice a year anyway. I was tested before this and it came back negative. After, positive. I didn’t think I had HIV, as I was tested just before all this happened and hadn’t really put two and two together.

Honestly, I think the worst part of this was being stuck at my moms because I literally hadn’t the energy to be on my own. So she would be at work and my brother wouldn’t want to watch over me because he was afraid I would die in front of him.

That and the TV being stuck on deadliest catch with me too weak to do anything about it. Fuck the discovery channel.”- MentalUproar

“My mum was diagnosed with HIV back in the early 90s, so here’s her story: Before the diagnosis, she was pregnant with my younger sister. When my sister was born, she wasn’t responding to stimulus correctly and appeared to have mental development issues. My sister was originally diagnosed with cerebral palsy, but shortly after the doctors thought that diagnosis was incorrect. Mum saw a bunch of different specialists and my sister underwent a number of tests, but they couldn’t figure out the problem. Eventually the doctors referred my mum to, at the time, the only HIV specialist in the country. The HIV specialist conducted a blood test for my sister, and did a test for my mum too. The diagnosis came back: My sister had been born with HIV, and my mum had it too. My mum had no idea that she was HIV-positive, as (she later found out) she had caught it from someone who in turn were unaware they had it. My mum had passed the HIV to my sister while she was pregnant. My sister only lived to her third birthday, but mum is still going strong. The whole event really messed her up, as you can imagine, but she’s since come to terms with it and is managing her illness with medication. Yeah, so for her it wasn’t really a “something’s wrong” feeling about herself or her body, it was a “something’s wrong” feeling about her newborn daughter. I was very young when this happened so I can’t imagine how she must have felt at the time, but it messed her up for a long time.”- Chet_Awesomelad

“I’ll answer. I had turned 20 and had no idea what I wanted to do with my life. I had taken up a vocation and was damned good at it but knew it wasn’t what I wanted to do and I had other shit clouding my head regarding sexuality and gender identity so I did what any confused young person did back then and shoved it all in the closet and signed up for the Army. I tested well and the recruiters loved me, it was a delayed enlistment so I could get some shit sorted out at home.

A month or so after I got back from MEPS I got a call from my recruiter to come down to the office. He said some paperwork was left unfinished and they needed me to go there and fill it out. I thought it was a bit off as it was a 4 hour drive but was like okay whatever lets do this so a few days later I get in the car with my recruiter and we drive up. This is where my memory gets vivid, I was sat down in a large waiting room, same one I was in when I was there before. Jackie Brown was on the TV in the corner and it seemed like a slow day. I was told to just wait until I was called back to medical, that’s when I started having the feeling that something was up. Medically speaking I had always been really healthy, I surfed and skated almost daily for hours on end in my free time so I was in really good shape. For some reason HIV was stuck in my head. I had experimented with other kids when I was a teen but nothing risky, always safe, I had never used any drugs especially intravenous, no tattoos, no blood transfusions or surgery etc. But the thought was there plaguing me. Finally what seemed like forever they called me back, I’m sat down in a dimly lit office with a diminutive woman who had guided us through filling out our medical questionnaire and a guy sorta standing off to the side who I would later find out was a medic. She flatly stated that my blood test results came back and I had tested positive for HIV. My heart sank as I instantly went through a mental checklist of how this could have happened, where did I go wrong, what was I going to do now since I was basically a walking corpse (sex ed in the 90’s was terrible). She continued talking but I didn’t hear a word of it over my own heartbeat in my ears. I heard the word retest and told them yes. They drew blood and ushered me out.

My recruiter was waiting for me and was told to bring me to another office at a different location where I was given information on living with HIV and contact information for my town. The drive back home was in absolute silence. I didn’t speak a word and it was everything I could do to not break down. I managed to hold it together till I got home and told my family. Shortly after I got enrolled in the Ryan White program and was put on a multitude of different pills. I was sicker than I had ever been in my entire life due to the medication. I had no appetite, I was throwing up constantly, and losing weight. I never knew what wanting to just die felt like until then. So with that in mind I made a decision. The pills made me sick and I could live like that until I took my own life or I could go and do everything I wanted to do and take the couple of years I had left without the pills and just live for me. So that’s what I did, it was an incredibly stupid decision but I was young and stupid and had nothing to live for. So I had fun, met great people (never ever put anyone at risk as I never wanted anyone to experience what I did) and had the time of my life. A couple years later I met someone who changed my world view completely and made me decide I wanted to live. So I went back to my doctor, re enrolled in the program was was surprised that they had a new pill out, it was once a day and the side effects were much less severe. Within a year my viral load (amount of virus present in my system) was undetectable by tests, the side effect still sucked but I could manage with them. Now 16 years later I’ve changed the drug I take, the one now has absolutely no side effects, no downsides, still once a day. I decided I would never let that disease define me but I would also never be ashamed of it, I wanted to educate as many people as I could. I’m as healthy as I’ve ever been, I’m happier with myself as a person, and found a wonderful person to share my long life with. Remember everyone love yourself, get tested, and stay strong!!”- Viatic_Unicycle

“My ex found out he was positive just as we started dating. A few weeks prior, he came down with flu like symptoms. But very strong. Also had difficulty swallowing for a few days. That was about it. Fortunately I tested negative, but what we quickly learned was that HIV is incredibly manageable these days. Just like a chronic illness. Medicine so great that you can’t even test positive if your numbers are right. Amazing stuff.”- parkinsg

“I am HIV positive. The only time it made me sick was at the beginning stage. I had what I thought was a really bad flu for 2 weeks. I didn’t get tested again for another year after that, and my results came back positive. Then I didn’t start seeing a doctor another year or so after that. However I was lucky in that my viral load was undetectable, even without a medication regimen. They still put me on meds to keep it that way. It’s been about 10 years now and I’m still undetectable. I’m also type 1 Diabetic and the diabetes is way harder to manage than the HIV.

tldr; HIV positive about ten years. Never had any problems or symptoms except when I was first infected, and that was flu symptoms.”-andr01dv2

“I found out July 17th of 2017. I went to the emergency room for something completely unrelated. I had been tested 6 months prior because I found out the guy I was dating used to be a male escort and was still sleeping with men he met off Craigslist while I was at work. I was sick for most of the winter of 2016 and 2017. I didn’t think much of it. And honestly I didn’t know that much about HIV. I’m a queer female. Honestly it just didn’t seem to be something I needed to know too much about. I wish that I had knew more about it because when I first got diagnosed it felt like the end of my life. I quickly found out that eventually I would become undetectable and therefore I could not pass it to anybody. I started dating a guy before I found out. We are still together. He is negative. I am now undetectable and he is no longer taking prep because our doctor cleared us. But anyway, to be honest I really just chalked it up to having a bad winter with getting sick. I never would have thought it was HIV. Get tested regularly. And get on prep. Don’t gamble with your health. Honestly my life is not a whole lot different. I take one pill a day. My children would not be hiv-positive in there has not been an hiv-positive baby born in New York state since 2016. But I’m not trying to downplay it. It sucks. Take care of yourself

Edit: I forgot to mention that I have two children. My daughter is 14 years old and she is aware. My son is 3 so obviously he has no idea. Any future children that I have would not contract the virus. I just could never breastfeed them which is kind of a bummer.”- BrandNewLegs

“I was living with my best friend when he found out. He had just come back from an overseas trip so we thought maybe he had some sort of flu or whatever from travelling. Then he just sort of got sicker and sicker until he almost fainted. We went to the doctors and he spent a few hours with an IV pumping fluid back into him and said he should be fine. He was feeling better. We got home and he started going down hill so he want back and took some blood tests ‘just in case’. When they told him he passed out cold. We were in a state of disbelief for a while and went to my parents place. It was essentially a really bad cold or flu like symptoms that he could not get over. I think he was back from overseas for around 2 months before he got the final diagnosis? The thing that made him go “shit” was a huge rash on his back and chest and that’s when we started going to the doctors.

This was around 5 years ago and I want to say he lives a completely happy healthy life where the only time he remembers he’s positive is when he takes his medication. He has a very full sex life and his partner takes Prep (look into it – highly recommend) to minimise risk of infection. They literally do not use protection at all and have been together for two years with no transmission.

If you’re dealing with someone who has just recently been diagnosed they are going to have an absolute whirlwind. I remember having to force my friend out of the house and he was looking over his shoulder constantly because he just ‘felt disgusting and thought other people could see it’. Ask your doctor if there is a support group and also to speak to a councillor because both of these things helped my friend IMMENSELY. The support ‘group’ he went to wasn’t one of those things you see on TV where everyone sits in a circle – it was just another dude who was positive and they had takeout on the couch and just chatted for a while about life.”- x_aceofspades

“Had no idea until I’d moved countries and was signing up to the local health service. I’d usually get tested every 6-12 months anyway and results were always negative. My “something’s wrong” moment was the facial expression of the nurse who had done the test. Been over two years since I was diagnosed. Hardest part was the initial diagnosis and being on the other side of the world from my friends and family. Thankfully I had previously educated myself about HIV and once the initial shock wore off I just got on with life. The only impact it has on me nowadays is the sitgma, and ignorance other people have about it. I am happy to educate those on it who want to know more but some people out there are just nasty and say horrible things.”- starscream_nz·2y

“It was caught on a whim. I did an STI test on a doctors’ visit for something (most likely a cold/flu) because he noticed I haven’t had one in a number of years. Two weeks later I got a phone call whilst on the bus on my way there to get the results from the front counter staff to make sure I was attending the appointment, which I thought that sounds weird but I didn’t think anything of it. Then the doc broke it to me. I most likely had it for about a year or two which coincides with a dude I was hooking up with. Turns out he didn’t believe HIV existed and eventually died of AIDS related Kaposi’s Sarcoma. My three anxieties about it is that I may forget a dose (easy to do), might end up in a place (like if I’m travelling) that I don’t have access or am denied access to my meds and that one day I might have to pay for meds outright (I live in Australia so they’re heavily subsidized atm). I do joke that I’ve taken more drugs than anyone I know though!”- jim_deneke